I’ve been asking Chat GPT how to cope with the loss of you-and I find myself arrested by the sad modern absurdity of this situation. Since I do not have any real friends and the therapists I’ve seen have not been particularly helpful, I am turning to an AI chatbot to help me deal with the enormous grief I feel over a microscopic organism who never even entered my womb, and yet I knew it was my daughter. Scientific technology is amazing and it’s given people opportunities they never could have dreamed of before, but society hasn’t really caught up with how to handle the grief that comes when those technologies fail or our dreams don’t work out.

Some of the suggestions Chat GPT gave:

• Give the embryo a name or nickname
• Keep a small object or keepsake
• Write a letter
• Create a private ritual or remembrance
• Hold a date that feels meaningful

When a therapist asked if I’d named you I said I hadn’t, but the truth is I call you Calista Juniper. Calista as a kind of portmanteau of my name, Kira, and my mother’s name, Cathy, the two women who would be raising you. Juniper because Juniper was the alias of the sperm donor I selected to create you with, and June was the name of my grandmother. I can’t guarantee that your name would have stayed Calista Juniper if you’d been born, but since you never will be, Calista Juniper you will forever be to me.

I’m not sure what object or keepsake or private ritual or remembrance I would use to honor you. While the day I found out you were genetically normal and a girl was one of the happiest days of my life, and the day I found out I could not implant you in my womb because my mother had been diagnosed with a serious progressive disease, and could not guarantee that she would be around to reliably help me raise you, was one of the saddest days of my life, I do not recall what dates either of those meaningful events fell on.

But writing a letter to you? That feels doable. So here I am.

I guess this is a love letter of sorts. I love you so much, my almost daughter. And yet it is not without shame or reticence that I admit my love for you.

I never got to see an actual picture of you but when the doctor showed me a diagram of what you looked liked, he specified that the diagram made you look bigger than you actually are, because an actual embryo is microscopic. How can I feel such enormous love for such a tiny organism? How can I feel such enormous grief over losing such a tiny organism?

How can I destroy something I love so much? My instinct is to keep you frozen, but I know that would be a sentimental waste of money since I see no future in which I can safely or responsibly unfreeze you and put you in my womb to develop in to a baby. And yet I cannot bear the thought of telling the clinic to destroy my own child, so I have not contacted them. That means I do not know if you even still exist, or how much longer you will continue to exist.

I asked ChatGPT if you were alive as a frozen embryo. It told me you are not “alive” in the same way an unfrozen embryo is but you are also not dead. I know that I am unequivocally alive but being unable to have you makes me not want to be alive anymore. There’s no way to passively unalive myself, like I can passively unalive you, and I lack the courage to actively unalive myself, so alive I will remain. I know there are still reasons for me to live, but the truth is my life will never be as rewarding or as meaningful or as full of love and joy as it would have been if I’d given birth to you.

You are not a sentient being, so you are not capable of love, but I know that had you become one, you would have loved me. I’ve felt like my friends and lovers did not love me as much as other people’s friends and lovers loved them, but I have no doubt that you would have loved me as much as other people’s children loved them, and that love would have been so healing.

I do not believe, as some people do, that embryos are actual human beings who should be afforded the rights of human beings, but you are so real to me, my almost daughter. I envision you constantly, in your embryonic form, in the form you would take as a baby, a toddler, a child, an adolescent, an adult. I think of all the things I’ll never get to do or experience with you. I’ll never feel you kicking inside of me, I’ll never feel you sucking milk from my breasts, I’ll never see you take your first steps, I’ll never hear you call me Mommy, I’ll never get to ask you how your day at school was or how your job’s going. There are a lot of hardships with you I will never experience either, but I know it all would have been worth it for the privilege of being your mom.

Every moment I live, I wish you were living by my side, every step I take, I wish you were holding my hand. I know I can’t stop living my life just because I don’t have you, but I do not even want to go out in public anymore because I cannot bear to see mothers with their little girls.I miss you so much but how can I miss someone who was never really there in the first place?

And how can I regret the existence of something I love so much? But I find myself wishing I never did IVF. It took me from the grief of wanting to be a mother but not being able to become one, to the grief of having the promise of a daughter, the blueprint of a daughter, the expectation of becoming a mother, and then having it snatched away from me.

They say grief comes in waves and it gets better with time, but this grief feels more like an ever present cloud that’s always hanging over me, and I cannot imagine time healing this wound. As time passes on, I will wonder who, and where and what you would have been. One grief cliche that does ring true for me is “Grief is love with no place to go”. I have so, so much love to give to you, my precious girl.

I cannot say that my grief over losing you is an especially hard and devastating grief, compared to other losses, because I’m sure losing a baby or a child is much harder, but it does feel like a particularly isolating and disenfranchising form of grief, and facing the loss of you and potentially my mother at the same time, feels particularly cruel.

You are with me even in my dreams, baby girl. When I’m not outright dreaming of you, I’m dreaming of small animals like mice or goldfish in danger I try but fail to protect, and that end up dying. I’m so, so sorry that I created you only to destroy you. But maybe it was selfish to create you in the first place. Maybe my lack of a partner or a career, my disability and my mental illness, made me unsuited to being your mother. Maybe, like me, you would have found life to be more pain than pleasure. Regardless, I take comfort in knowing that the suffering in this situation is all one sided on my part, and you will never know suffering.

I’m not religious, and I’ve never believed in the afterlife, but I also find comfort in fantasizing about a time and a place, where despite never having developed in my womb, you’ll be placed in to my arms fully formed. I’ll feel you snuggled up against me, as you look up and smile at me. I’ll smile back at you and say “I’m your Mommy.”

Love,

Your Almost Mother

Fast forward to third grade and my teacher tells us that it’s important to live up to your potential and that if you’re flipping burgers at McDonalds your not living up to your potential. She then clarifies that she means when you’re in your thirties, not when you’re eighteen.

Fast forward thirty something years later and I’m relating that incident with my second grade teacher to my therapist. I have chronically low self esteem, fueled by the constant shame and guilt I feel over “not living up to my potential.”In group therapy I talk about how I volunteer with immigrants, prisoners, and grieving children, and another group member says it makes him sad that I do all that and I still can’t feel good about myself. Although I have a college degree, I’ve never been able to get a job that requires one, and I’ve only even been able to get a few interviews for jobs that require them. I’ve also never had a job that pays decently. My uncle made more money driving trucks than I’ve made working in daycare centers and nursing homes.

Looking back, I find the messages my teachers and family members gave me about college, careers, and living up to your potential deeply problematic.

First of all, it’s really rude and disrespectful to look down on anyone for the job they have. All jobs contribute to society and have value. It is especially ridiculous to look down on someone’s job when you are using the services that their job provides. I’m pretty sure my teachers and all of the kids in those classrooms, who are now adults, have eaten at fast food restaurants and used products that were transported by truck drivers. They can preach about how they want everyone to “fulfill their potential” by getting what they consider to be good jobs, but the truth is they are reliant on a number of people not “fulfilling their potential” and filling what they consider to be bad jobs, in order for their own lives to function smoothly.

Second of all, it’s foolhardy to portray college as the only path to success, or as a guarantee of success. In terms of salary, on average, truck drivers make about as much as teachers do. Unlike teachers, truck drivers don’t have to pay for a college degree in order to get their job, so they may be better off financially. As I mentioned above, I didn’t get an economic return on investment from my college degree. My parents paid for college so I don’t regret going, but if I had been struggling to pay off student loan debt while working a minimum wage job I would regret it. Sometimes not going to college is the smarter choice.

When I worked in daycare most of my colleagues had college degrees and some even had masters degrees. However, twice I was asked by coworkers who didn’t have college degrees what I was doing working in a daycare center when I had one. I majored in psychology, which doesn’t open up many doors at the bachelors level, but I have no talent for majors that do, like computer science or engineering. When it comes to the social services field, it’s not uncommon for people with masters degrees to be making less than truck drivers.

I would like to have a job that at least pays a living wage, but I think how “good” a job is comes down to more than just how much it pays or whether or not it requires a college degree. Working with children and with the elderly provided me with fulfillment and I knew I was making a positive difference in their lives. It sucks that those jobs don’t pay a living wage. It sucks that in addition to the practical challenges of not being able to make a living wage, I have to deal with the self esteem issues that come with being made to feel as though I’m not living up to my potential.

I also think whether or not you live up to your potential comes down to more than your employment status or what kind of job you have. There are also the hobbies you engage in, the places you travel to, the way you treat people,etc., I have volunteered with immigrants, prisoners and grieving children. That has made just as much, if not more of a positive difference in my life and the lives of others as any job I’ve had.

Instead of using a lesson on fulfilling your potential as an opportunity to insult fast food workers, my teacher could have stressed the importance of living in a way that is consistent with your values, of finding meaning and purpose in your life, of taking accountability for your actions, of continuously seeking to improve your life and the lives of others.

When I mentioned that my uncle was a truck driver, instead of using that as a warning of what would happen to you if you didn’t go to college, she could have used it to highlight the various different jobs people have that contribute to our society and the various different paths there are to success.

I remember being surprised to realize how intelligent my uncle was because I’d been led to believe that truck drivers and people who didn’t go to college were not smart. I suppose some people would see my uncle’s intelligence combined with his job as a sign that he’s not living up to his potential, but those people need to expand their minds and pull their heads out of their asses.

The notion that people who work low wage jobs are lazy and stupid is so false, and I’m appalled that that’s the kind of message that was being promoted to me by my teachers and family members. People who work low wage jobs often work very hard and long at them, and being poor in general is hard work. Menial, low wage jobs can still require a certain kind of intelligence, even if it’s not classical book smarts, and you can be intelligent in ways that have nothing to do with employment.

My school district is considered very good academically, but in terms of character education it taught some very bad lessons.

“Really?’’ she replied, with an excitement that mirrored mine.

I had never heard of Tim Walz until he became Kamala Harris’s vice presidential pick and most people had never heard of Nonverbal Learning Disorder until it was revealed that his son Gus had it. NLD is something that I, however, am intimately familiar with. A neurologist diagnosed me with it at age twelve. For years my mother had been searching for a diagnosis that would explain the issues I had with fine motor skills, visual spatial skills, and social skills as well as executive functioning and stereotyped movements. While diagnoses such as Asperger’s Syndrome, Tourette’s Syndrome, Elective Mutism, Obsessive Compulsive Disorder, ADHD, and Perceptual Impairment were tossed around, none of them seemed to fit precisely or to fully account for all my symptoms.

Nonverbal Learning Disorder fit me almost to a tee, and accounted not just for my weaknesses, but for my strengths as well. We tend to think of disabilities solely in terms of deficits, but the NLD profile also involves assets. Despite its misleading name, those with NLD don’t have any trouble speaking, and they have strong verbal skills. The name refers to trouble processing nonverbal information and utilizing nonverbal skills. A criteria for diagnosis is a discrepancy between one’s verbal and performance IQ. Most people have similar verbal and performance IQ scores, with a difference of ten points being considered significant. I have a sixty point difference between my verbal and performance IQ scores.

In the People article, Tim Walz says he realized that Gus’s disability is not a setback but a secret power. While I applaud the acceptance and appreciation of his son, I do worry that statement obscures just how challenging NLD can be. In my case, my disability has been both a power and a setback, and I would guess that the same is true of most people with NLD. As a child I could read well above my grade level and I got high scores on the verbal sections of standardized tests. Although I was shy, I could express myself articulately and people were often amazed by how good my memory was. If asked to write an essay I could produce something cogent and insightful, but if it was written by hand teachers would have trouble deciphering it. My poor fine motor skills made my handwriting illegible and it also caused me to struggle with self-help skills such as tying my shoes, buttoning my clothes, cutting up my food, brushing my teeth and brushing and washing my hair. My visual spatial deficits meant I was terrible at putting together puzzles and block designs. I struggled with geometry because I could not see angles. My deficient social skills meant I had few friends and was rarely invited on playdates. Sometimes my mother would force me to invite a classmate to my house for a playdate and would stay home from work to help me properly socialize. Like Gus I preferred to be alone but I gravitated towards books rather than video games.

My neurotypical brother had friends over at our house on a regular basis, and one day while he had a friend over, his friend’s mother called to ask if her son was there. “Yes”, I replied and hung up the phone. His mother then called a second time and once again asked if her son was there. Thinking perhaps she hadn’t heard me the first time, I once again replied “Yes” and hung up the phone. When she called a third time she angrily asked again if her son was there and requested that I please not hang up the phone this time because she needed to talk to him. While this woman seemed to assume that I was deliberately being rude, that hadn’t been my intention. I had just taken her words very literally, as those with NLD tend to do. Since she had only asked if her son was there, I thought that was all she wanted to know, and had not inferred that her asking if he was there meant she wanted to talk to him. Along with difficulty making inferences, trouble reading body language and facial expressions, interpreting tone of voice and understanding sarcasm can also make social interactions challenging for those with NLD. My inability to tell a social lie has offended some people and has cost me on job interviews, but there are others who find my honesty refreshing.

In addition to the three main deficits of visual spatial, fine motor and social skills, there is a fourth deficit sometimes mentioned in the NLD literature. That deficit is executive functioning skills, and I personally find it to be the most challenging deficit of all. Executive functioning is a term for a set of cognitive processes that involve planning, multitasking, managing time, paying attention, transitioning, regulating emotions and controlling impulses. My executive dysfunction means I struggle to perform activities of daily living and it’s why my academic performance often didn’t seem to match up with my intelligence level.

Gus has been described as brilliant, and while I wouldn’t go that far in describing myself, I know I am highly intelligent. Unfortunately the high verbal intelligence of those with NLD can make it hard for others to understand that they have a disability and they may instead assume that their struggles and differences stem from laziness, rudeness or just not caring. It has been a battle for me to get disability benefits from the government and I was initially denied. It may seem unbelievable that someone who can express themselves eloquently verbally and in writing can struggle with tasks as simple as tying their shoes, but in some ways, NLD is a disability of paradoxes.

NLD is not currently recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and some clinicians and researchers do not think it is a distinct clinical entity, but rather a form of autism. As an adult I was diagnosed with autism as well. Gus also has ADHD and anxiety and so do I. I also have depression. It’s important to note that if you’ve met one person with NLD, you’ve met one person with NLD, and people with NLD are people and not diagnoses.

Tim Walz expressed pride that Gus got his drivers license at seventeen, but at thirty- nine I still don’t have mine. I’m on my third permit but have never made it to the road test. I recently saw an occupational therapist at a rehabilitation center to evaluate my driving. She noted my slow reaction time, trouble making K-turns , and my difficulty discerning left from right and gas from brake. She said I would need specialized instruction and a lot more practice than most to master driving. That has been true of a lot of things in my life.

I’ve always been a very late bloomer. I didn’t get my bachelors degree until I was thirty- three and I got my first job a few months later. It was at a daycare center and my NLD meant I struggled with certain aspects of it such as changing diapers and arranging cots. Fortunately my boss was very understanding. With practice and the help of an occupational therapist, I was able to get the hang of it and succeed at the job. Unfortunately when I later worked at another daycare center, my boss there was not so understanding, and he fired me for issues related to my disability.

Although in my early twenties I spent two years at a residential facility for young adults with NLD that was meant to teach independence, at thirty- nine independence is not something I have achieved. I live with my mother and I rely on her to drive me around and assist with me various tasks of daily living. My mother has been a tireless advocate for me in the same kind of way that Tim Walz has been an advocate for Gus and I am so grateful to have her but I wish I didn’t need her so much. I had my first romantic relationship at the residential facility for young adults with NLD, but I haven’t had a romantic relationship since. I don’t have many friends and my best friend is someone I’ve never met in person who believes she may also have NLD.

Tim Walz revealed that he and his partner struggled with infertility and that Gus and his sister were conceived with intrauterine insemination (IUI). I also struggle with infertility and have attempted to conceive using IUI with donor sperm. Accessing and going through fertility treatment can be challenging for anyone, as can being a parent, but when you’re a single woman with NLD going through infertility, that adds a whole new level of challenges and complexities to the situation. Fortunately my own mother is willing to support me in my dreams of becoming a mother but other people in my life, including medical professionals, have not been so supportive. They do not feel that someone with my disabilities and in my situation should be having children.

Still, for all the challenges NLD has brought to my life, in some ways it has also been a gift. My strong verbal skills have enabled me to become a published writer and that as well as the empathy I have developed as a result of my struggles have enabled me to thrive at and help others in various employment and volunteer roles such as counseling grieving children, doing activities with nursing home residents, teaching English to immigrants, writing profiles for adoptable pets and engaging in educational correspondence courses with prisoners.

I was heartbroken when a few months ago my therapist decided to stop seeing me because she felt I needed a therapist who had more expertise in my disabilities, while acknowledging that finding such a therapist would be hard, because there just aren’t a lot of resources for people like me. The neurodivergent in our society are in desperate need of more resources, and the first step to providing resources is spreading awareness.

Google searches for NLD have gone way up since Tim Walz has revealed that Gus has it and various media outlets have been providing information about what NLD is. While I was fortunate enough to have some wonderful special education teachers as a child and adolescent, special education resources are lacking in this country and those that exist are more geared toward servicing verbal than nonverbal learning disabilities. As a former teacher with a neurodivergent son, Tim Walz has made special education funding part of his platform. I hope he will also focus on developing resources to serve neurodivergent adults, because NLD is not a disability that ends at eighteen.

A lot of the pain associated with being neurodivergent, comes not so much from neurodivergence itself, but from society’s reaction to it, and unfortunately our society is rife with ableism. I have always moved my body in ways that are not typical. I flap my hands, I twitch my lips, I walk on my toes, I pace back and forth, I jump up and down (traits more associated with autism than NLD.) In and of themselves engaging in those behaviors brings me joy rather than pain, because it’s always something my body has felt compelled to do for reasons I can not explain to people who are neurotypical. It’s when people start to criticize, bully and ostracize me for those behaviors, to demand an explanation for them, that the pain sets in, as I feel shame for being different. When people acknowledge that those behaviors are harmless and that it’s perfectly okay to engage in them, I start to feel okay about myself.

After Tim Walz spoke at the Democratic National Convention, Gus Walz stood up, exclaimed “That’s my dad!’’, and began to weep. Some saw it as a beautiful moment, while others used it as an opportunity to make fun of Gus. That same week I also cried in public, at a camp for grieving children that I was volunteering at, upon watching an adolescent perform a song in tribute to her mother who had passed away. I remember weeping at age seventeen after delivering a speech in my special education program, thanking my mother for all she had done to support and advocate for me. The truth is that for all their problems with superficial social skills, people with Nonverbal Learning Disorder tend to be truly genuine people with a strong sense of morals, empathy for the struggles of others, and a desire to make the world a better place. Now others need to work on making the world a better place for them.

I truly hope that Tim Walz and Kamala Harris secure a victory in November but regardless of whether they win or not, as a result of their campaign, an individual with Nonverbal Learning Disorder has gotten the spotlight, they’ve been accepted and appreciated for who they are, and an underrecognized disorder is finally getting the attention it deserves. That in and of itself is a victory.

There’s a lot of talk about how society perpetuates stigma against mental illness, and how that stigma makes people afraid to reach out for professional help. Well, I’d like to talk about how it’s not just “society” that perpetuates stigma, stereotypes and misinformation about mental illness (and developmental disabilities)-a lot of that comes from the “professional help” itself. There is so much ableism, discrimination and disinformation within the mental health field.

I thought I wanted to work in the mental health field so I enrolled in a masters in counseling program, but I found that as an autistic, depressed, individual with ADHD, I did not feel safe, supported, respected or welcome in such a program. Over the course of the three semesters I was enrolled in that program, I encountered the following ideas expressed by my peers or by the authors of my course material:

• People who have serious mental health conditions have no business working in the helping professions.
• People with mental illness are motivated to work in the mental health field so that they can feel superior to people with more serious problems.
• Autistic people lack empathy.
• Autistic people are more likely to be school shooters.
• Electroconvulsive therapy is such an “extreme”treatment for depression.
• People who don’t work due to depression are choosing not to work.
• It is appropriate to turn the word “depressing” in to a verb, and say that people who exhibit symptoms of depression are “depressing.”

Let’s take some of the above statements and apply them to physical illness and see how they sound:

. People with medical conditions have no business working in the medical field.

. People with medical conditions who work in the medical field want to feel superior to those with more serious illnesses.

. Chemotherapy is such an extreme treatment for cancer.

. People who don’t work due to cancer are choosing not to work.

. People exhibiting symptoms of cancer are “cancering.”

Those statements sound pretty ridiculous and offensive, don’t they? Well, they’re just as ridiculous and offensive when applied to mental illness. As for the statement that autistic people lack empathy, that belief came about as a result of neurotypical people having a lack of empathy for autistic people, and all of the original statements above show an appalling lack of empathy for the mentally ill. Autistic people and mentally ill people are far more likely to be victims of violence than perpetrators of it.

The above statements are clearly made by people who do not know what mental illness is like, and if people with mental illness are banned from working in the mental health field, patients are deprived of being treated by people who do know what mental illness is like. I suspect more people who know what it’s like working in the field would lead to more effective treatments. When studying the counseling theories we were taught in grad school, I would think that those techniques may work with people experiencing life adjustment issues, but it was hard to imagine them working with people who have serious mental illness.

I am now “choosing” not to work due to my depression. Multiple mental health professionals advised me to make that choice, but there are also mental health professionals urging me to get a job. For a while I was undergoing the “extreme”treatment of ECT, and before that I was in a partial hospitalization program, which would have made working virtually impossible. Not to mention that all the “depressing” I was doing made it hard to perform at work and my job didn’t want to give me time off for Transcranial Magnetic Stimulation (is that considered an extreme treatment?) This was before insurance decided they weren’t going to approve it anyway.

My last job was more understanding, and was willing to give me time off for my depression treatments. When people asked where I was, my boss said I’d sprained my ankle. That way I wouldn’t have to deal with the stigma of mental illness, and people wouldn’t assume I was choosing not to work. A few years ago I had to take time off work because I fell and hurt my leg. No one assumed I was choosing not to work, because it was understood that my bone contusions made it inadvisable for me to work, and if I did come in to work with a busted leg, my pain and symptoms would get worse. It’s sad that even mental health professionals cannot understand that the same principle applies to mental illness.

My neighbor’s son went on disability due to his mental illness and was then fired. Is he choosing not to work? What about the people who are unable to get hired due to mental illness?

Since I’m not working right now, I’ve thought that maybe now would be a good time to return to grad school, but then I think about all the toxic ideas about mental health I’d be exposed to, and I’d rather not.

This month I found myself unexpectedly cornered in my own home by two fully armed police officers. I had committed the crime of being mentally ill. I had not hurt anyone else but I had hurt myself, two days previously. The physical pain of the nail file slashed across my arm was a welcome distraction from the emotional pain.

This month I decided to cut ties with the organization that works with me to keep me out of the mental hospital, because if they’re going to call the cops on me, aren’t they causing the exact outcome they’re meant to prevent? But then I went back to them because I realized I do not have any better options.

This month I was asked how many times I’ve been hospitalized for mental illness, and realized I’ve lost count.

This month I was asked if I fantasize about going to sleep and never waking up, and I admitted that yes, I do.

This month a psychiatrist suggested I go on lithium and anti-pyschotics, even though I’m neither psychotic nor bipolar.

This month I underwent electric shock therapy.

This month, on Mother’s Day I felt intense grief thinking about how I’m not a mom, how people have told me that my mental illness means I shouldn’t be a mom. But I also felt intense gratitude thinking about how my mom has supported me through my mental illness, has prevented me from experiencing homelessness and other negative outcomes of mental illness that those less fortunate.

This month would have been my stepbrother’s 37th birthday. He died at 23 of a drug overdose. Somehow, when asked by a mental health specialist if anyone in my family had drug problems, I forgot about him.

This month is the anniversary of my cousin’s suicide.

This month I was informed that my account balance is negative $362.

This month I watched a video put out by my former therapist in honor of mental health awareness month, in which she mentioned taking care of your mental health at work. I felt sad because due to the severity of my mental illness, I no longer have her as my therapist and I’m no longer working.

I called them the Lucy and Ethel of the nursing home. Another staff member referred to them as Pinky and the Brain. They were thick as thieves, the best of friends, the cutest couple. You rarely saw one without the other. Someone even suggested they were gay. They say a true best friend makes people question your sexuality.

Lydia was an elegant red head in her 80s, the daughter of a famous man. She was generally sweet tempered and mild mannered, with a great, dry sense of humor. When you’d ask her how she was doing, she’d reply “still breathing.” Kate was an Asian woman in her 90s, a former seamstress and karate teacher, with a fiery temper. She was the ultimate badass. My mom was also named Kate, and I informed her that she would never be as cool as the other Kate (after hearing my stories of the other Kate’s antics, she couldn’t help but agree.) Both Lydia and Kate were highly intelligent and capable of the kind of abstract, higher order thinking you don’t typically see in Alzheimers.

Although Lydia and Kate were very close, they fought constantly. Lydia was constantly under the impression that she had loaned Kate $200, and Kate had failed to return it.

Kate once accused Lydia of looking down on others as if she was standing on top of a mountain.

“So, you’re saying I’m a snob?”, replied Lydia.

“Yes, that is what I’m saying”, snapped Kate.

“I’m not a snob, Kate. I have no reason to be.”

I was an activities assistant, and Lydia and Kate were the heart and soul of activities. They came to every activity and always sat next to each other. Kate would concentrate deeply on any activity she was presented with whether it was painting, sand art, or a puzzle, and would enter a state of flow. She would also fold napkins in to origami art. When I played the game Memory with her, I debated whether I should let her win, but there was no need to let her win, because she was able to beat me.

I was not as artistically inclined as Kate. When I did button art with Lydia, she told me it was very unattractive. When we were making blankets to donate to an animal shelter, I failed to cut straight. “Watch what you’re doing!’’, scolded Kate.

“What will the dog think?’’, teased Lydia.

Lydia had a fondness for dogs, especially Chow Chows. She would talk about what great watch dogs they were, and ask my boss if she’d considered getting one. Kate would talk about the pet monkey she’d owned.

One of the residents’ favorite games was a game where we’d pick a letter and they’d come up with all the words they could that started with that letter. Most of the residents would come up with simple words like cake and cat, while Lydia would come up with complex words like catastrophe and cacophonous. When I’d give the residents a clue about a big word I was thinking of, I’d say “This is a Lydia word.”

Lydia and Kate were constantly trying to escape the nursing home, and once they even made it in to the parking lot. They would sit around negotiating their schedules and Lydia would write notes to Kate telling her to call her daughter to come pick her up, and offering to pay her a lot if she would take her home. One note ended with “P.S. I need my loot.” I learned the importance of keeping Lydia and Kate engaged in activities, because otherwise they’d be plotting to escape.

One day they walked in to the activity room announcing that Lydia’s daughter and Kate’s son were getting married (never mind that both the son and daughter were married to other people.)

Kate would use the phone to try to call her parents, and Lydia would confide to the staff that she didn’t think Kate’s parents were still alive. Kate always referred to her parents and husband in the present tense, whereas sometimes Kate referred to her husband in the present tense and sometimes she admitted that he died, leading me to refer to him as Schrodinger’s husband.

My boss joked that Kate was Lydia’s new husband. Lydia’s children said that her husband had been her everything, and Kate was clearly Lydia’s everything. Although their friendship was poignant and touching, Lydia was dependent on Kate in ways that were frustrating. When we’d ask the residents a trivia question that Lydia clearly knew the answer to, rather than saying it out loud, she’d whisper it to Kate. She’d tell Kate she was her slave and refuse to eat lunch without her. Once when we asked Lydia why she wasn’t painting, she replied “Because I asked Kate what she thought of the color purple, and she didn’t reply.”

My boss expressed concern for how lonely Lydia would be if Kate died. We never imagined that Lydia would die first.

When my boss told me that Lydia had been put on hospice, I felt weak in the knees. Lydia hadn’t been eating much and was losing weight. Being put on hospice generally meant that the resident was expected to die within six months, but we figured Lydia would live longer than that. She went downhill quickly though.

While Lydia had always had a habit of asking a question and then asking the same question again shortly afterwards, it became more pronounced. One afternoon when the residents were watching a movie, Lydia asked Kate so many times if they’d eaten lunch, that I tried to separate the two, but Lydia refused to be separated from Kate. The questioning was so disruptive that I found myself debating whether I should invite Lydia to the next movie. It was a moot point because Lydia was never again in any condition to come to a movie.

By Thanksgiving time Lydia was no longer getting out of bed, and was barely eating. Unlike most residents near death, she still remained lucid and able to converse. I couldn’t help but cringe when she’d answer the “How are you?”’ question with her usual “still breathing”, because I feared that soon she would no longer be breathing. I also couldn’t help but cringe at seeing Lydia force fed by the nurses. She protested that she wasn’t three years old, and that the nurses were mean to her. Kate stood by her bed and said that it was in Lydia’s nature to be difficult.

I later heard from the nurses that Kate had spent the night in Lydia’s bed, holding her hand. It was at that point that I realized that the great love story of my life was not Romeo or Juliet, or Lucy and Ricky or Lucy and Ethel, but Lydia and Kate.

Kate roamed the halls telling the nurses that her patient needed a doctor. She cornered one nurse and said “I thought my patient had a cold, but now I think she has pneumonia and she’s not eating.” The nurse said that Kate was “losing it”without her friend, Lydia.

Back in Lydia’s room, Kate tried to get Lydia in to a wheelchair and to a doctor. When I entered the room she introduced me to Lydia as the doctor. I told Kate that I wasn’t a doctor, and she replied “Well, you’re the best person here. I’d go to you before I’d go to anyone else.” It was the greatest compliment anyone had ever paid me.

The next day I found Lydia’s room empty. Fearing that she had died, I asked the nursing assistants where she was. They told me she was in Kate’s room. She had risen on her weak legs, and stumbled across the hall to sit at the foot of Kate’s bed. “I sure do like having you around, Kate. I’d go crazy without you”, she said to her best friend.

That weekend my boss texted me to tell me that Lydia had passed away. Kate’s daughter spent the day with her because she was concerned about her, and another resident said he was concerned for Kate now that her friend was gone. But Kate made no mention of Lydia and when a nursing assistant asked about her, she replied “Who’s Lydia?”

It was a relief that Kate was not suffering over her friend’s death, and perhaps that was the silver lining of Alzheimers, but at the same time it seemed wrong for her to forget someone who had been such an important part of her life (although even when Lydia was alive, there were times when Kate would claim not to know who she was.) The silver lining in Lydia going first is that Lydia’s death was not as hard for Kate as Kate’s death would have been for Lydia. While I wish Kate several more happy, healthy years and would not want to lose her too, a part of me feels that Lydia and Kate should have gone together like Thelma and Louise.

While I did not feel entitled to the kind of grief that a friend or family member would feel over Lydia’s death, I was also not capable of professional detachment. I told my therapist I was upset that one of my favorite residents had died, and with her one of my favorite friendships. They say death ends a life, not a relationship, but is that true when one person doesn’t remember the other?

In the following weeks I’d feel a catch in my throat and an ache in my heart every time I played the word game with the residents and realized I could no longer say “This is a Lydia word”, every time I saw the calendar advertising Lydia’s 86th birthday at the end of the month that she would not be alive for, every time I saw Kate wandering the halls of the nursing home without Lydia by her side.

I found Lydia’s obituary online. It emphasizes her vivacious personality and asks that donations be given to an animal shelter in her honor. It says she is survived by her children Theresa and Jonathan, and her grandchildren Daniel, Samantha, Jacob, and Erin.

“And her best friend, Kate”, I thought to myself.

I got the news on my way back from the mental hospital, and it landed like a bomb in my gut. My mother told me my therapist wasn’t going to see me anymore. I immediately started sobbing and dug my fingernails in to my arm until it bled. This had been my second time in the mental hospital in less than a month. The first time I was in the mental hospital my therapist talked to me over the phone and told me how brave I was for seeking help. This second stay, in a different mental hospital had been awful, and I was looking forward to telling my therapist all about it in our next session.

But now there was an email saying that our next session would be a termination session, so I had more pressing issues to talk about. God, termination. I know that’s the technical clinical term for the ending of therapy, but did she really have to use such a cold, impersonal word? It was the same word used in the email by my asshole boss when I was unexpectedly fired. Now I was being unexpectedly “fired” by someone I was deeply attached to and thought I could rely on. I felt like a bug about to be squished, a piece of trash about to be thrown away.

I fought back tears as my therapist explained that I needed a higher level of care, that she couldn’t give me what I needed in once a week sessions, that she couldn’t ethically continue to treat me. I knew that the American Psychological Association says that you’re under an ethical obligation not to continue treating a client who’s not getting better. But how can you ethically, as a decent human being, abandon someone who’s going through a really hard time, when they need you more than ever? It was as if I was on the edge of a cliff and she had just pushed me in to the sprawling abyss.

She admitted that it was a decision made by her group practice and that she didn’t think it would benefit me to know all the reasons I couldn’t be seen by her anymore. I imagined it fell in to categories such as “failure to progress” or “noncompliance”, practical criteria that do not take in to account the delicacies of the human heart. And oh, how this heart of mine was breaking.

How could I bear to lose someone who I had bared my heart and soul to week after week? Someone who had met me with unconditional positive regard and validation. Someone who had been a wellspring of comfort. I felt as though my security blanket was being ripped out of my arms and now there was no comfort to be found anywhere in the world.

She had listened sympathetically when I told her about all the people in my life who had hurt and abandoned me, and validated how traumatic that was. Now here she was hurting and abandoning me and inflicting trauma. It felt like such a betrayal.

“Why did you agree to take me on, if you couldn’t handle me?’ I demanded to know.

“Things were different back then. Now your self harm is becoming more frequent and more severe.”

“That’s because I’ve experienced infertility. Why do I have to be punished for my mental illness when my mental illness itself is punishment enough?”

“This isn’t meant as a punishment…”

No, but it certainly felt like it.

She told me that she loved working with me, that I was so witty, that I kept her grounded, that we’d developed a great working relationship. I thought about how I’d rather she secretly hate working with me and still be willing to do it, than tell me she loved working with me but was unwilling to do it anymore .

“So what have you learned and taken out of our time together? she asked.

“Nothing!”I retorted. It wasn’t that I’d actually gotten nothing out of our time together, it was that I didn’t feel like complimenting someone who was hurting me so badly.

I had envisioned her being with me through all the ups and downs of my life for months or years to come, but now that vision, like so many visions I’d had for my life, was shattered.

“I’m losing an important therapeutic relationship”,I lamented.

“That’s unfortunate. I wish things could be different.’’

I could feel a wave of grief washing over me, and a wave of resentment knowing that the one sided nature of the therapeutic relationship meant that she could leave the relationship without feeling devastated, while I couldn’t.

I felt an impulse to beg and plead with her not to leave me, but I knew the decision had been made and I was powerless to change it.

I told her how much she’d hurt my feelings and triggered me.

“That was not my intention”

“That’s what everyone says.”

“What else is there to say in a really shitty situation?’’

“Will you see me again after the intensive outpatient program?’ I asked.

“That would depend on what level you’re at. I think you’d be better off with a therapist who specializes in autism.”

“I don’t want another therapist! I want you!” I wanted to shout. I told myself this was different than people not wanting to be my friend because I had autism, but it didn’t feel all that different.

“Thank you for allowing me to be a part of your therapeutic journey. I’ll be thinking of you as you make the transition to the outpatient program…good night.”

I sobbed as she ended our final session, wishing I could impel her to stay with me.

***

I have nightmares about my therapist abandoning me and waking up and realizing that nightmare is a reality, impels me to dig my nails in to the meat of my arm.

For most of my adulthood I have been unable to have any kind of romantic relationship and while that has caused me pain in itself, it has at least spared me the pain of a romantic breakup. But the breakup of a therapeutic relationship is also quite painful. It’s a painful feeling when the person you talked to about all your pain is not available to you anymore and is now the source of your pain.

It’s hard knowing that even people who are paid to put up with me, will abandon me. It’s hard knowing that in the end, I was just too messed up, even for a therapist, that even a great therapist could not fix me, because I’m just too broken.

I miss my therapist every day. I wonder if the 8 or 9 months I spent with her is enough to justify this kind of pain, if that means it will take that long to get over her, or if I’ll ever get over her.

I wonder how I can ever trust a therapist again, knowing they’ll drop me if my problems get too bad. I can’t let myself get close to my therapist in my new program, when I know for a fact I’ll lose her in the six or eight weeks when the program ends.

I tell my new therapist how sad I am about losing my old therapist. “Do you understand that your therapist was only trying to make sure you got the best possible care?” she asks.

Yes, intellectually my brain understands that but my heart continues to ache. I feel the sting of abandonment, the absence of my beloved support person in a viscerally physical way, right in the spot where my heart is.

This program is all about dialectical behavior therapy, with dialectics being two seemingly opposing ideas that are true at the same time. Using dialectics I can say that my therapist did what she felt was best for me AND it hurt like hell to lose her.

When I talk about how much I miss my therapist, I get asked what I liked about her, how she was able to be a source of comfort to me. I can list her positive qualities, like that she remembered everything I told her and listened empathetically, but it can be hard to put the essence of a special connection you have with a human being in to words.

She told me she’d be willing to stay in contact with me in a therapeutic role. I haven’t contacted her so far but if I did it would be to ask “How do I deal with the pain of losing you?’’

It’s fighting for years to get access to sperm.

It’s having to talk to social workers before you can be approved for fertility treatments, and fearing you’ll be denied because of your neurology and your life situation.

It’s spending loads of money you don’t have on fertility treatments that don’t work.

It’s having your grief invalidated because people think or outright say that you shouldn’t be having a baby in the first place.

It’s having a relative suggest it’s selfish to have a baby without a father.

It’s having another relative suggest that autistic people shouldn’t reproduce.

It’s having a third relative call up your mom and tell her not to support you in your quest to become a mom yourself.

It’s having your doctor say that you should reconsider your plan to have a child and get a pet instead (and instead of telling her you already have three pets, you just burst in to tears.)

It’s having a therapist tell you you shouldn’t have a baby because you don’t drive.

It’s having another therapist tell you that anybody who wants to have a baby deserves one.

It’s having a third therapist dump you as a patient because your depression over your infertility has become too severe and you need a higher level of care.

It’s losing your best friend because she criticizes your decision to pursue motherhood, and you lash out.

It’s feeling alone and unwanted because you don’t have a partner to have a baby with.

It’s feeling like your infertility is your own fault since you waited until you were 38 to try to conceive, while also knowing you didn’t really have any other option.

It’s seething with envy and longing at every pregnancy announcement, every ultrasound scan, every baby bump picture, every picture of a mom and her kids.

It’s countless blood draws, ultrasounds, medications, and injections.

It’s having to go off your antidepressants and on to hormones that make you depressed.

It’s repeatedly seeing one lonely pink line on a test, and trying to will a second line to appear.

It’s wanting to smash that sign in the ultrasound room that says “Congratulations on your pregnancy!’’

It’s taking the day off of work because another IUI failed and then getting a text about a co-worker’s surprise baby shower.

It’s listening to groups of women go on and on about pregnancy and parenting and child birth, and feeling left out of a club you desperately want to be a part of.

It’s having a coworker ask if you don’t want kids and how old you are, and wishing the ground would open up and swallow you.

It’s having a coworker at a daycare center ask if you have kids and when you say no, hearing “So, the kids here are enough for you?” and knowing that no, they’re not enough for you, because your heart breaks every time you see a parent leave the building with a child, and you leave empty handed.

It’s feeling heartbreak mixed in with the pride and joy every time you get told how great you are with kids, every time you interact with kids.

It’s wanting to look the other way every time you pass a mom with her kids in public.

It’s searching for sperm donors and wishing your sperm donor could be your life partner instead.

It’s realizing you’re probably going to have to find another sperm donor because your original sperm donor is all out of sperm and your fertility treatments are continuing to fail.

It’s crying and crying and crying and crying some more.

It’s feeling so frustrated and sad and overwhelmed that you smash things.

It’s being stressed out by infertility and then being told that your stress is the reason you can’t get pregnant.

It’s having to cancel an IUI cycle because you’re so distressed over your previous IUI cycles that you’ve landed yourself in a mental hospital.

It’s skipping your next IUI cycle because you just don’t have it in you.

It’s being told that your extreme distress over your failed fertility treatments shows that you can’t handle any more fertility treatments and you can’t handle being a mom.

It’s realizing that IUI is probably not going to work for you and that you’ll have to move on to IVF- to more injections, and medicines and money spent and gatekeepers deciding whether you deserve to be a mom.

It’s reading the dismal success rates of fertility treatments for women your age and falling into a pit of despair.

It’s googling information about infertility and then having your facebook feed filled with ads for snake oil “fertility coaches.”

It’s seeing IUI success rates compared to success rates for sex, and feeling sad that having a baby the” natural way” is not for an option for you.

It’s hearing people say that the solution to infertility is to relax and stop trying, and stop thinking about it, and even though you know that’s asinine advice in the first place, feeling sad that it’s not an option for you either.

It’s seeing pictures of nuclear families on Facebook with “beautiful family” comments, knowing that it’s unlikely you’ll ever have that kind of family, but wishing you could have at least one small part of it.

It’s feeling constant anxiety because you’re so desperate to be a mom and you know that your time to become one is running out.

It’s fearing that you’ll never be a mom.

It’s feeling guilty about trying to become a mom.

It’s learning that you’re going to have to wait and wait and wait some more to become a mom, when waiting any longer feels unbearable because you’ve been waiting your whole life for this.

It’s being impatient for your joy to come when it seems everyone else got their joy years ago.

It’s marveling at people who get pregnant by accident when you can’t get pregnant on purpose.

It’s feeling embarrassed revealing your struggle to others because you fear being judged.

It’s dreading having to experience another Mother’s Day without being a mother.

It’s feeling weak for being so torn apart by infertility, because it’s not like you have cancer, and then learning that women going through infertility have rates of depression and anxiety similar to those with cancer.

It’s being triggered a thousand times a day, because while people will avoid talking about things like rape, assault, drugs and suicide to avoid triggering others, no one’s going to avoid talking about motherhood.

It’s feeling embarrassed for making people feel guilty for talking about their kids in front of you, and as if they have to walk on egg shells.

It’s trying to distract yourself with activities that have nothing to do with motherhood, and realizing that almost everything comes back to motherhood somehow-every book, every movie, every conversation.

It’s not being able to enjoy or perform at your job because there are too many triggers.

It’s being told that if motherhood doesn’t work out for you, you should do something else, while knowing that there’s nothing you want even half as much as you want motherhood.

It’s getting your hopes up every fertility cycle, only to have them crushed by the flow of your period or that solitary pink line.

It’s knowing that your three failed IUIs may just be the tip of the iceberg in terms of the failure and loss to come in your fertility journey.

It’s feeling jealous of everyone who has a child.

And even jealous of people going through infertility with a partner by their side.

Even jealous of neurotypical, independent woman attempting to become single mothers by choice.

It’s feeling like continuing with fertility treatments is unbearable but not having a child is more unbearable.

It’s knowing that all the stress, agony, money and invasive treatments may all be for nothing for the end.

It’s having someone ask if you’ve considered adoption, and knowing that adoption is not an option for you, because no one will give a child to a single, autistic, mentally ill woman.

It’s hearing mothers talk about how hard it is to be constantly needed by their kids and knowing that that’s the kind of hard you want in your life, rather than the hard of being unneeded and unwanted.

It’s feeling like I have to keep my pain a secret because trying to become a mother as a single autistic woman who’s dependent on her own mom is something shameful.

It’s putting all this out there, knowing I’m opening myself up to criticism and judgement, because I just don’t want to keep all this pain inside me anymore.

I had a Wordpress blog but I haven’t written on it in a while, so I decided rather than revive that from the dead, I’d start a new blog here. Does Medium qualify as a blog site? I’m not sure, but it’s a way of getting my writing out in the world.

A few years ago, I wrote a list of New Years Resolutions on my blog and I failed miserably at almost all of them. So I don’t do formal New Years resolutions anymore but if I did one of my resolutions would be to write more. Yes, I know for goals to be useful, they have to be measurable and specific, but if I set a goal to write, say, 1,000 words a day, I’d fail miserably at that too. If I set a goal to just write more, all I have to do is write more than I did last year and I’ve succeeded. Since I didn’t write much last year, that shouldn’t be hard, just like being a better person than I was “yesterday” isn’t hard, since I was such a hot mess for such a long time. Someone like me who suffers from feelings of failure, needs all the successes she can get.

I think that profile picture of me was taken on New Years Eve 2019, around the same time I made the failed New Years resolutions on my blog. It’s kind of ironic that it’s a picture of me with a glass of wine, since I don’t drink. I might like to change my picture and I could look up how to do it but there’s a good chance even the simplest explanation will be too complex for me. Unfortunately I’m a real dummy when it comes to understanding things like that. I’m not the least bit tech savvy.

I have so many questions about Medium and I’m not sure that Google can help me. It took me a while to get the hang of Wordpress and I never entirely mastered it. Now it’s been so long since I used it, that I’ve forgotten everything I knew about it and they were always changing the interface anyway. I can see some similarities between Medium and Wordpress but there are also some significant differences. I’m not sure which one is better for my wants and needs but hopefully I’ll like it here and will write on a regular basis. Here’s to trying new things in the New Year. Happy belated New Year to whoever reads this.